your child’s individual needs (see the Creating Your€¦ · Dear Parents and Caregivers, This health care notebook has been designed for you: the parents and caregivers of a child

Dear Parents and Caregivers,

This health care notebook has been designed for you: the parents and caregivers of a child with special health care needs.

You play an important role in your child’s care; doctors and nurses rely on you to give them information about your child’s health. It can be helpful to have your child’s health care information organized and in one place so you can manage it easily.

Please adapt this health care notebook to fit your child’s individual needs (see the Creating Your Care Notebook section).

The Office for Genetics and People with Special Health Care Needs is a resource for locating information on services you may need for your child. Please visit our Resource Locator at http://specialneeds.health.maryland.gov/ or call our Resource Line at 410-767-1063 or 1-800-638-8864 for help with finding what you need.

If you have any questions or feedback, please do not hesitate to connect with us at the numbers above. Thank you for your interest in the health care notebook!

Sincerely,

The Office for Genetics and People with Special Health Care Needs

http://specialneeds.health.maryland.gov/

My Health Care Notebook Updated April 2013 by the Office for Genetics and People with Special

Health Care Needs

Follow These Steps to Create Your Child’s Care Notebook:

Step 1: Gather existing information ◊ Gather together any health information you already have

about your child. This may include reports from recent doctor’s visits, recent summary of a hospital stay, this year’s school plan, test results, or informational pamphlets.

Step 2: Review the Care Notebook

◊ Which of these pages could help you keep track of information about your child’s health or care?

◊ Choose the pages you like. Print copies of any that you think you will use. You can get additional Care Notebook pages at http://phpa.dhmh.maryland.gov/genetics/SitePages/create_care_notebook.aspx

◊ Here are some websites that have resources for customizing your care notebook: http://www.medicalhomeinfo.org/for_families/care_notebook/care_noteboo k.aspx

http://www.delawarefamilytofamily.org/care_notebook.htm

http://cshcn.org/planning-record-keeping/care-notebook

Step 3: Decide what to keep in the Care Notebook

◊ What information do you look up most often? ◊ What information do people caring for your child need? ◊ Consider storing other information in a file drawer or box where you can

find it if needed.

Step 4: Put the Care Notebook together ◊ Each of us has our own way of organizing information. The key is to make

it easy for you to find again. ◊ Some suggestions for supplies used to create a Care Notebook:

3-ring notebook or large accordion envelope will hold papers securely. Tabbed dividers to create your own sections. Pocket dividers to store reports. Plastic pages to store business cards and photographs.

http://phpa.dhmh.maryland.gov/genetics/SitePages/create_care_notebook.aspx

http://phpa.dhmh.maryland.gov/genetics/SitePages/create_care_notebook.aspx

http://www.medicalhomeinfo.org/for_families/care_notebook/care_notebook.aspx



http://www.delawarefamilytofamily.org/care_notebook.htm

http://cshcn.org/planning-record-keeping/care-notebook

MEDICAL SUMMARY FORM

Name:_________________________________ Birth Date:____________________ Medical History/Diagnosis(current): Past Medical History/Diagnosis: *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ *_______________________________ *_____________________________ Medical Professionals: PCP:___________________________ Doctor:_______________________ Phone:__________________________ Specialty:_____________________ Phone:________________________ Doctor:__________________________ Doctor:_______________________ Specialty:________________________ Specialty:_____________________ Phone:___________________________ Phone:________________________ Doctor:__________________________ Doctor:_______________________ Specialty:________________________ Specialty:_____________________ Phone:___________________________ Phone:________________________ Doctor:__________________________ Doctor:_______________________ Specialty:________________________ Specialty:_____________________ Phone:___________________________ Phone:________________________ Doctor:__________________________ Doctor:_______________________ Specialty:________________________ Specialty:_____________________ Phone:___________________________ Phone:________________________ Doctor:__________________________ Doctor:_______________________ Specialty:________________________ Specialty:_____________________ Phone:___________________________ Phone:________________________

Maryland Care Notebook Developed by the Maryland Department of Health and Mental Hygiene, c. 2011

Name:__________________________ Birth Date:__________________________

*ALLERGIES*:_________________________________________________________ Medications: Name: Dose: Frequency: *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ Nutritional Supplements: Name: Dose: Frequency: *________________________________ _______________ _________________ *________________________________ _______________ _________________ *________________________________ _______________ _________________ Daily Procedures: *______________________________________________________________________ *______________________________________________________________________ *______________________________________________________________________ Surgeries/ Hospitalizations(recent): Date: Hospital: Reason: *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________ *_____________ ______________________ _____________________________

Maryland Care Notebook Developed by the Maryland Department of Health and Mental Hygiene, c. 2011

My name is _______________________________________________________________________________________First Middle Last

My nickname is ___________________________________________________________________________________

I live at � Home � School � Foster home

� Hospital � Other ________________________________________________

The names of the people in my family are

First Last Relationship to me

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

Other people who know me well are (friends, babysitter, neighbors)

First Last Relationship to me

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

My Pets

My Pet is a __________________________________________ Name of Pet _____________________________

My other pet is a ____________________________________ Name of Pet _____________________________

Tip:This form can help providers learn more about your child. It can also teachyour child to describe his or her needs, likes, and dislikes. Give your childas much help as he or she needs in filling it out. Update it as your childgrows and changes.

All about Me @

F

Child’s Name__________________________________

Date of Birth _______________

My “Favorites”

Toys ____________________________________________________________________________________

Games _________________________________________________________________________________

Hobbies ________________________________________________________________________________

Songs __________________________________________________________________________________

TV Shows ______________________________________________________________________________

Other __________________________________________________________________________________

Things I like to do during my free time

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

Foods I like are

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

Foods I don’t like are

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

I usually go to bed at ____________________________________________________o’clock.

Before bed, I usually______________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

Things I need help with are (for example: washing up, brushing teeth, dressing, etc.)

___________________________________________________________________________________

___________________________________________________________________________________

Things I can do myself are________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

@ All about Me

F

Family Information

Maryland Care Notebook (Adapted from the Care Notebook with permission, Children’s Hospital and Regional Medical Center, Seattle, WA, 2003.)

Maryland Department of Health and Mental Hygiene, c. 2007

Child’s Name: ___________________________ Nickname: ___________________

Date of Birth: __________________________ Blood type: ____________________ Diagnosis: __________________________________________________________ Legal Guardian: ______________________________________________________ Address: ____________________________________________________________ Phone: ______________________ Alternate Phone: _________________________

Language Spoken at Home: ____________________________________________ Other language(s): ____________________________________________________ Interpreter needed? Yes: ______ No: ______ Interpreter: ______________________________ Phone: _____________________

Family Members Mother’s Name: ______________________________________________________

Address: ____________________________________________________________ Email: ____________________________ Phone: ___________________________

Father’s Name: ______________________________________________________ Address: ____________________________________________________________ Email: __________________________ Phone: _____________________________

Sibling’s Name: ____________________ Age: _____



Other household members: _____________________________________________

Important family information: ____________________________________________ Emergency Contact

Name: _____________________________________________________________

Address: ____________________________________________________________ Phone: ______________________ Alternate Phone: _________________________

Care Summary: Activities of Daily Living



Use this page to write about your child’s abilities to feed him or herself, bathe, get dressed, use the bathroom, comb hair, brush teeth, etc. Describe what your child can do by him or herself and any help or equipment your child uses for these activities. Describe any special routines your child has for bathtime, getting dressed, etc. Date: _________________ ________________________________________________________________

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Care Summary: Communication



Use this page to write about your child’s ability to communicate and to understand others. Describe how your child communicates. Include sign language words, gestures, or any equipment or help your child uses to communicate or understand others. Include any special words your family and child use to describe things. Date: _________________ ________________________________________________________________

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Care Summary: Coping/Stress Tolerance



Use this page to write about how your child copes with stress. Stressful events might include new people or situations, a hospital stay, or procedures such as having blood drawn. Describe what things upset your child and what your child does when upset or when he or she has “had enough”. Describe your child’s way of asking for help and things to do or say to comfort your child. Date: _________________ ________________________________________________________________

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Care Summary: Social/Play



Use this page to write about your child’s ability to get along with others. Describe how your child shows affection, shares feelings, or plays with other children. Describe what works best to help your child get along or cooperate with others. Describe your child’s favorite things to do. Include any special family activities or customs that are important. Date: _________________ ________________________________________________________________

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Care Summary: Mobility



Use this page to write about your child’s ability to get around. Describe how your child gets around. Include what your child can do by him or herself and any help or equipment your child uses to get around. Describe any activity limits and any special routines your child has for transfers, pressure releases, positioning, etc. Date: _________________ ________________________________________________________________

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Care Summary: Rest/Sleep



Use this page to write about your child’s ability to get to sleep and to sleep through the night. Describe your child’s bedtime routine and any security or comfort objects your child uses. Date: _________________ ________________________________________________________________

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Child’s Name_________________________________ Date of Birth _____________________

Health Care Providers

Primary Care Provider

Name_____________________________________ Specialty (if any)______________________

Clinic/Hospital Name _____________________ Telephone ____________________________

Address___________________________________________________________________________

Fax _______________________________________ Email _________________________________

Medical Specialists and Health Care Providers

Name _________________________________________ Name ________________________________________

Specialty______________________________________ Specialty______________________________________

Address _______________________________________ Address_______________________________________

Telephone ____________________________________ Telephone ___________________________________

Fax __________________________________________ Fax _________________________________________

Email _________________________________________ Email _________________________________________

Clinic/Hospital Name _________________________ Clinic/Hospital Name__________________________

Frequency of Visits (how often) _______________ Frequency of Visits (how often) _______________

Name _________________________________________ Name ________________________________________


Address _______________________________________ Address_______________________________________


Fax __________________________________________ Fax _________________________________________

Email _________________________________________ Email _________________________________________



Tip: Instead of filling out the form, staple yourprovider’s business card onto the space provided.

J


Health Care Providers

Name _________________________________________ Name ________________________________________


Address _______________________________________ Address_______________________________________


Fax __________________________________________ Fax _________________________________________

Email _________________________________________ Email _________________________________________



Name _________________________________________ Name ________________________________________


Address _______________________________________ Address_______________________________________


Fax __________________________________________ Fax _________________________________________

Email _________________________________________ Email _________________________________________



Name _________________________________________ Name ________________________________________


Address _______________________________________ Address_______________________________________


Fax __________________________________________ Fax _________________________________________

Email _________________________________________ Email _________________________________________



J


Health Insurance Plan

Primary Insurance

Name of Plan ____________________________________________________________________

Telephone ________________________________________________________________________

Address___________________________________________________________________________

Subscriber (Name of Policy Holder) ____________________________________________________

Subscriber ID#____________________________________________________________________

Group # __________________________________________________________________________

Case Manager/Care Coordinator _________________________________________________

Telephone _______________________________________________________________________

Other Contacts____________________________________________________________________

Telephone _______________________________________________________________________

Secondary Insurance

Name of Plan ____________________________________________________________________

Telephone ________________________________________________________________________

Address___________________________________________________________________________

Subscriber (Name of Policy Holder) ____________________________________________________

Subscriber ID#____________________________________________________________________

Group # __________________________________________________________________________

Case Manager/Care Coordinator _________________________________________________

Telephone _______________________________________________________________________

Other Contacts____________________________________________________________________

Telephone _______________________________________________________________________B

Pharmacy



Pharmacy: ____________________ Hours/Days of Operation: __________

Contact Person: ________________________________________________ Address: _____________________________________________________ Phone: ________________________ Fax: __________________________ Notes: _______________________________________________________





Early Intervention Services



Developmental Center: ________________________________________

Start Date: _________________________________________________ Contact Person: _____________________________________________ Address: ___________________________________________________ Phone: _______________________ Fax: ________________________ Website/Email: ______________________________________________

Family Resources Coordinator: _________________________________

Start Date: _________________________________________________ Contact Person: _____________________________________________ Address: ___________________________________________________ Phone: _______________________ Fax: ________________________ Website/Email: ______________________________________________

Therapists



Therapists:

Occupational Therapist (OT) ___________________________________ Start Date: _________________________________________________ Agency/Hospital/Clinic: _______________________________________ Address: ___________________________________________________ Phone: _____________ Fax: _____________ Email: _______________

Physical Therapist (PT) _______________________________________ Start Date: _________________________________________________ Agency/Hospital/Clinic: _______________________________________ Address: ___________________________________________________ Phone: _____________ Fax: _____________ Email: _______________

Speech-Language Pathologist: __________________________________ Start Date: _________________________________________________ Agency/Hospital/Clinic: _______________________________________ Address: ___________________________________________________ Phone: _____________ Fax: _____________ Email: _______________

Home Care



Home Nursing Agency: ___________________________________________

Start Date: ____________________________________________________ Contact Person: ________________________________________________ Address: _____________________________________________________ Phone: ________________________ Fax: _________________________

Website/Email: _________________________________________________


Start Date: ____________________________________________________ Contact Person: ________________________________________________ Address: _____________________________________________________ Phone: ________________________ Fax: _________________________

Website/Email: _________________________________________________


Start Date: ____________________________________________________ Contact Person: ________________________________________________ Address: _____________________________________________________

Phone: ________________________ Fax: ________________________

Website/Email: _________________________________________________

Child Care Community Health Care/Service Providers



Child Care Provider: ____________________________________________

Start Date: ____________________________________________________ Contact Person: ________________________________________________ Address: _____________________________________________________ Phone: _______________ Fax: _______________ Email: _____________





Respite Care Community Health Care/Service Providers



Respite Care Provider: ________________________________________

Start Date: _________________________________________________ Contact Person: _____________________________________________ Agency: ___________________________________________________ Address: ___________________________________________________ Phone: _______________________ Fax: ________________________ Website/Email: ______________________________________________

Respite Care Provider: ________________________________________ Start Date: _________________________________________________ Contact Person: _____________________________________________ Agency: ___________________________________________________ Address: ___________________________________________________ Phone: _______________________ Fax: ________________________ Website/Email: ______________________________________________

Respite Care Provider: ________________________________________ Start Date: _________________________________________________ Contact Person: _____________________________________________ Agency: ___________________________________________________ Address: ___________________________________________________ Phone: _______________________ Fax: ________________________ Website/Email: ______________________________________________

Appointment Log



DATE PROVIDER QUESTIONS/PROBLEMS TO

BE DISCUSSED REASON

SEEN/CARE PROVIDED

NEXT APPOINTMENT

Growth Tracking Form



DATE HEIGHT WEIGHT HEAD

CIRCUMFERENCECHECKED BY

Hospital Stay Tracking Form

DATE HOSPITAL REASON NOTES



B–4 CHILD’S HEALTH RECORD CHR_B_E0605.pdf©2000 PPMHP

PR

OFILE / II. EQ

UIP

MEN

T / SUP

PLIES / SER

VIC

ES

Respiratory Care: ❏ Not Applicable to my child

❏ Oxygen: Liters Route Start Date

❏ SVN: Medication Amount Frequency

❏ Suctioning: Route Catheter size Frequency

❏ Tracheostomy: Size/Brand Change Frequency

❏ Ventilator: Type Settings: IMV SIMV Volume

Peak Pressure PEEP Rate

❏ Pulse Ox: Type Settings: Low Alarm High Alarm

❏ Apnea Monitor: Type Settings: High Heart Rate Low Heart Rate

Apnea settings in seconds

❏ CPAP: Type Settings: Pressure

Comments:

My Child’s Profile Child’s Name: DOB:

Child’s Name ______________________

© Junior League Family Resource Center 2005

BASELINE DATA Normal Vital Signs:

Pulse rate: __________________ Site best taken: _________________________________________________ Blood pressure: _____________ Site best taken: _________________________________________________ Temperature: ________________ Site best taken: _________________________________________________ Respiratory Rate: _________ per minute Oxygen Saturation: ________________________________ Pupils (normal, dilated, constricted, equal): _____________________ Skin color: ___________________________ Blood draw site: _____________________________________________________________________________

Systems (Baseline Data) OK b

Problem b

Comments/Description

CNS / Sensory

Heart / Blood (include recent blood counts)

Gastrointestinal

Respiratory (describe breathing sounds)

Genitourinary

Musculoskeletal

Baseline X-ray findings

Developmental

Does your child speak? Yes No Can s/he be understood by others? Yes No What language does your child speak? ______________ Name of interpreter, if language other than English: _______________________________________________ Does your child use (Please circle all that apply): picture board computer keyboard sign language gesture/facial other (specify) ___________________

Communication

Is your child hearing impaired? Yes No Is your child legally blind? Yes No

Others:

Medications

Allergies: Pharmacy: Phone:

MEDICATION DATE STARTED

DATE STOPPED

DOSE/ROUTE (with or without

food?)

TIME GIVEN PRESCRIBED BY



Date and Time ofConversation

Name of Personand Agency

Phone Number Notes (what wasdiscussed or decided)


Phone Log

It is easy to lose track of what you discussed with providers when you have so manydifferent phone calls about your child. Use this form to keep track of phone calls andother conversations you have about your child’s health care.

V

B–10 CHILD’S HEALTH RECORD CHR_B_E0605.pdf©2000 PPMHP

PR

OFILE / IX

. IMM

UN

IZA

TION

S / ALLER

GIES


Physician’s Signature:

IX. Immunization and Allergy Record Log

Immunization: Date Date Date Date Reaction if any Physician

Diphtheria-Tetanus (DT)

Diphtheria-Pertussis- Tetanus (DPT)

Tetanus

Polio (OPVIPV)

Measles-Mumps-Rubella (MMR)

Measles-Rubella (MR)

Mumps

Rubella (3-day Measles)

Haemophilus Influenzae (HIB)

Hepatitis A

Hepatitis B

Varicella (Chicken Pox)

Rotavirus

Pneumovoccal (Pneumovac)

Pneumococcal Conjugate

Influenzae (Flu Shot)

Skin Test Log:

Test Date Result Provider

Newborn Screen

Tuberculosis (TB)

B–11CHILD’S HEALTH RECORD CHR_B_E0605.pdf©2000 PPMHP

PR

OFILE / IX

. IMM

UN

IZA

TION

S / ALLER

GIES


Allergy Record Log:

Allergic reactions can be life threatening. Keep good records on all reactions.

Date Allergy Type of Reaction

Lab Work/ Tests/ Procedures



DATE TEST RESULT COMMENTS

Child’s Name: ___________________________ Date of Birth: ___________________________

MONTHLY CONSUMABLE SUPPLY LOG

Child’s Name:

Phone:

Address:

Physician:

Insurance Company Responsible for Supplies: Policy #:

Authorization #:

Insurance Phone: Insurance Contact:

Supplier:

Phone: Contact:

Monthly consumable supplies are disposable supplies you need to re-order monthly. For example: catheters, feedings bags, formula, saline, gauze, syringes, etc. Use a separate sheet for each supplier.

Date Description Amount Manufacturer Order Number

Maryland Care Notebook. Adapted from Delaware Family Voices.


Supplies/Equipment

Description of Item________________________________________________________________________________

Provider/Vendor Name ____________________________________________________________________________

Contact Person___________________________________________ Telephone _____________________________

Prescribed by ____________________________________________ Telephone _____________________________

Reason Prescribed_________________________________________________________________________________

____________________________________________________________________________________________________

Contact Person for Service/Insurance Approval____________________________________________________

___________________________________________________________ Telephone ____________________________

Comments (for example: kinds of service needed, part numbers, costs)_________________________________

____________________________________________________________________________________________________






____________________________________________________________________________________________________


___________________________________________________________ Telephone ____________________________


____________________________________________________________________________________________________






____________________________________________________________________________________________________


___________________________________________________________ Telephone ____________________________


____________________________________________________________________________________________________ R

CCHILD’S HEALTH RECORD

EXP

ENSE LO

G

Out-of-Pocket Expense Log

Use this log to track expenses incurred that are not covered by insurance.Make sure to save all receipts for tax purposes.

Date Item Description / # Cost Date Item Description / # Cost

CHR_C_$L_E0605.pdf©2000 PPMHP

C CHILD’S HEALTH RECORD

Out-of-Pocket Expense Log

Date Item Description / # Cost Date Item Description / # Cost

CHR_C_$L_E0605.pdf©2000 PPMHP

EXP

ENSE LO

G

UTAH CARE NOTEBOOK Page 36 of 45

(Adapted from the Care Notebook with permission, Children’s Hospital and Regional Medical Center, Seattle, WA, 2003.) Utah Department of Health, c. 2005.

☼ School District: ___________________________________________________________ Address: ____________________________________________________________________ ____________________________________________________________________________ Phone: ____________________ Fax: _________________ Web Site: __________________ Special Education Coordinator: ________________________________________________ Address: ____________________________________________________________________ Phone: ____________________ Fax: _________________ E-Mail: _____________________

504 Accomodation Plan Coordinator (if different from above): _________________________ Address: ____________________________________________________________________ Phone: ____________________ Fax: _________________ E-Mail: _____________________

District Nurse assigned to your child’s school: ____________________________________ Address: ____________________________________________________________________ Phone: ____________________ Fax: _________________ E-Mail: _____________________ ☼ School / Preschool: ___________________________________________________________ Address: ____________________________________________________________________ Phone: ____________________ Fax: _________________ Web Site: __________________ Principal / Administrator: ______________________________________________________ Phone: ____________________ Fax: _________________ E-Mail: _____________________ Classroom Teacher: __________________________________________________________ Phone: ____________________ Fax: _________________ E-Mail: _____________________ Resource Instructor: __________________________________________________________ Phone: ____________________ Fax: _________________ E-Mail: _____________________ Aide / Assistant / Intervener: ___________________________________________________ Phone: ____________________ Fax: _________________ E-Mail: _____________________ Special Education Director / Teacher(s): _________________________________________ Phone: ____________________ Fax: _________________ E-Mail: _____________________ Therapist(s): ________________________________________________________________ Phone: ____________________ Fax: _________________ E-Mail: _____________________ Other Contacts:___________________________________________________________ ________________________________________________________________________

(Some parents store IEP and 504 plan information in sheet protectors following this section.)

Health Care As You Move to Adult Life Maryland Office for Genetics and People with Special Health Care Needs

For more information visit: http://phpa.dhmh.maryland.gov/genetics/SitePages/home.aspx

Health care is important to be successful in the transition to work, independent living and adult life. As an adult, your child may take on more responsibility for their healthcare. Some pediatricians will see young adults until they are 21 years old. Unless your child sees a doctor that cares for both children and adults, he or she will need to transition to an adult doctor at some point. This is important because good health habits and health problems change as we get older. Here are some things you and/or your child will need to do:

• Learn about your health issues and how to explain your healthcare needs. Make a list of all the things you will need to keep yourself healthy.

• See your doctor on a regular basis (at least once a year) to help you stay healthy and see a dentist every 6 months. You can start at your next visit, even while you are still seeing a pediatric doctor.

o Write down questions before your visit. o Spend time alone with your doctor or the nurse to discuss your health

concerns.

• Check to see if your immunizations (shots) are up to date. • Make sure that you know how to tell when you need medical attention quickly.

Know when and where to call. • Keep a record of your appointments, medical history, medications and phone

numbers of doctors. • Begin to make your own medical appointments and fill your own prescriptions. • Learn about your health insurance and what it pays for. Know what you need to

do to keep your insurance active. • Talk to your doctor about when is a good time for you to transfer your care to a

doctor who cares for adults and develop a plan. • Keep a notebook that helps prepare you to transfer to your new doctor. The

notebook should contain important information about your medical history, medications, specialists, and insurance.

• Be involved in decisions affecting your health care, like choosing a doctor and making decisions about health insurance.

• REMEMBER, BEING INDEPENDENT DOES NOT MEAN YOU HAVE TO DO THINGS ALONE. It means you take responsibility, and that you ask for help and support when you need it.

• Ask questions! Be part of the plan!

http://phpa.dhmh.maryland.gov/genetics/SitePages/home.aspx

Getting Started: ____ I know the names of my medical conditions and how they affect me. ____ I know the names of my medications, what they are for, and when to take them. ____ I know the name of my doctor(s) and how to make an appointment if I need one. ____ I know how to get my prescriptions filled. ____ I know what my insurance options are once I turn 18. Maryland Transitioning Youth (http://www.mdtransition.org/Health%20Care.htm or 1-800-637-4113) can help you get started, or check with your service or transition coordinator. ____ I have adult health care providers who accept my insurance. Ask for a list of providers from your insurance company, or if you have already chosen a doctor, ask if they take your insurance. ____ I have checked if my adult insurance will cover all of my health care needs (such as medicines, therapies and medical equipment). If not, I have looked into other options for assistance. Maryland Transitioning Youth (http://www.mdtransition.org/Health%20Care.htm or 1-800-637-4113) can help you get started, or check with your service or transition coordinator.

RESOURCES

1. The Center for Children with Special Needs – Teen Transition Notebook (Also, for use with Young Adults) http://cshcn.org/teen-transition-adult-health-care

2. Got Transition? National Health Care Transition Center’s website. http://www.gottransition.org/youth-information

3. Healthy Transitions

New York State’s website for moving from pediatric to adult health care http://healthytransitionsny.org/skills_media/tool_show

4. KidsHealth - Educates youth on health basis, diseases and conditions - http://kidshealth.org/teen/index.jsp?tracking=T_Home

5. The Youthhood: life planning for your future - http://www.youthhood.org

6. Maryland Children and Youth with Special Health care Needs Resource Locator - Online database designed to help families of children with special health care needs, youth and providers find needed resources. http://specialneeds.dhmh.maryland.gov

http://www.mdtransition.org/Health%20Care.htm

http://www.mdtransition.org/Health%20Care.htm

http://cshcn.org/teen-transition-adult-health-care

http://www.gottransition.org/youth-information

http://healthytransitionsny.org/skills_media/tool_show

http://kidshealth.org/teen/index.jsp?tracking=T_Home

http://www.youthhood.org/

http://specialneeds.dhmh.maryland.gov/

iTransition-Health: Resources for Youth and Young Adults Check Your Skills

(Maryland Department of Health and Mental Hygiene, Prevention and Health Promotion Administration, Office for Genetics and People with Special Health Care Needs. For more information visit: http://phpa.dhmh.maryland.gov/genetics/SitePages/home.aspx

Source: Envisioning My Future: A Young Person’s Guide to Health Care Transition from Children’s Medical Services, Florida Department of Health. Available at: http://hctransitions.ichp.ufl.edu/pdfs/envisioning_my_future.pdf

AGES 12 – 14 “New Responsibilities” AGES 15 – 17 “Practicing Independence” AGES 18 & UP “Taking Charge


http://hctransitions.ichp.ufl.edu/pdfs/envisioning_my_future.pdf

iTransition-Health: Resources for Youth and Young Adults Parent’s Health Care Check List for Transitioning Youth

(Maryland Department of Health and Mental Hygiene, Prevention and Health Promotion Administration, Office for Genetics and People with Special Health Care Needs.


Source: Transition to Adult Health Care: A Training Guide in Two Parts from Waisman Center, University of Wisconsin-Madison, University Center for Escellence in Developmental Disabilities. Available at: http://www.waisman.wisc.edu/wrc/pdf/pubs/TAHC.pdf


http://www.waisman.wisc.edu/wrc/pdf/pubs/TAHC.pdf

iTransition-Health: Resources for Youth and Young Adults Parent’s Health Care Check List for Transitioning Youth

(Maryland Department of Health and Mental Hygiene, Prevention and Health Promotion Administration, Office for Genetics and People with Special Health Care Needs.


Source: Transition to Adult Health Care: A Training Guide in Two Parts from Waisman Center, University of Wisconsin-Madison, University Center for Escellence in Developmental Disabilities. Available at: http://www.waisman.wisc.edu/wrc/pdf/pubs/TAHC.pdf


http://www.waisman.wisc.edu/wrc/pdf/pubs/TAHC.pdf

Care Summary: Transitions-Looking Ahead



Your child and family may go through or have many transitions, small and large, over the years. Three key transitions are: when your child reaches school age, when he or she nears adolescence, and when your child moves from adolescence into adulthood. Other transitions may involve moving into new programs, working with new agencies and care providers, or making new friends. Transitions involve changes: adding new expectations, responsibilities, or resources, and letting go of others. It’s not always easy to think about the future. There may be many things, including what has to be done today, that keep you from looking ahead. It may be helpful to take some time to jot down a few ideas about your child’s and family’s future. What are your child’s and family’s strengths? How can these strengths help you plan for “what’s next” and for reaching long term goals? What are your dreams and your fears about your child’s and family’s future? Date: _________________ ________________________________________________________________

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Care Summary: Child’s Page-Now and Later



Use this page for your child’s words and thoughts about his or her life now as well as later. What are your child’s dreams? What does he or she do well now that might give direction for life later? What does your child want to be when he or she grows up? Date: _________________ ________________________________________________________________

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1

Estate/Future Planning Developed by The Center for Infants and Children with Special Needs: Children's Hospital Medical Center of

Cincinnati and The Arc of Hamilton County.

Letter of Intent

No one lives forever, not even parents of children with disabilities. Fears about what will happen to your child after you’re gone keep you from doing the very thing that will give you peace of mind: Planning. You fear that your child’s quality of life may not be the same as they have now. You also know that it should not be left totally up to their sister or brother to care for them. Sometimes the thought of all of this is so overwhelming that you don’t even know where to start. This section is that starting place. It can be a way to facilitate discussion among your family members or just a way to begin organizing your own thoughts and getting them down on paper. You can begin with the less emotional section like the Personal Information before moving on to the more difficult task of choosing a Guardian. Guardianship guidelines vary from state to state. Your attorney can advise you, but not all attorneys are familiar with Special Needs Trusts. A list of attorneys who specialize in this area may be obtained through the national, state or local Arc. Update the plan annually; birthdays are a good time to do this. Don’t forget to make copies and give them to all those who should know about your wishes. Planning is a process that takes time, but once you have things decided you will be able to breathe that sigh of relief knowing you no longer have to worry about the future.

Parent/Caregiver Signature Date_______________

Parent/Caregiver Signature Date_______________

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Living Arrangements

Where and in what type of situation would you like to see your child live? Would they live

alone or have roommates? What neighborhood? How much supervision would they need?

If currently in a supported living environment, list the following information:

Home Manager Name and Phone Number___________________________________________ Case Manager Name and Phone Number ___________________________________________ First Choice of Future Residential Provider ______________________________________________________________

Second Choice___________________________________________________

Other Service Agencies

(Example: Family Resources, Transportation, etc.)

Agency Name____________________________________________________ Contact Person___________________________________________________ Phone Number___________________________________________________ Reason Used____________________________________________________ Agency Name____________________________________________________ Contact Person___________________________________________________ Phone Number___________________________________________________ Reason Used____________________________________________________

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Will and Estate Plans

Letters of Guardianship have been approved by:

Judge_______________________________________ Date_______________

Approved Guardian’s Name__________________________________________

Address_______________________________________________________

Phone Number___________________________________________________

Relationship_____________________________________________________

Approved Successor Guardians

Name__________________________________________________________

Address_______________________________________________________

Phone Number___________________________________________________

Relationship_____________________________________________________

Name__________________________________________________________

Address_______________________________________________________

Phone Number___________________________________________________

Relationship_____________________________________________________

If a guardian has not been appointed, list in order of preference the people who you would like to serve as guardian, should guardianship prove necessary in the future. Include name(s), address, phone number and the person’s relationship to you. ___________________________________________________________________

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TRUSTS

“Trusts are flexible legal documents by which one party leaves assets to another party (a trustee) to be used for the benefit of another person, charity, and so on. The trust instrument gives specific instructions as to how to pay out the assets. Trusts are not only for the wealthy. They represent a way to withhold assets from someone who may not be old enough, have enough experience, or have the ability to make wise decisions… Several different trust options are now available that allow provision for people with disabilities without affecting their eligibility for Medicaid and SSI. In general, these trusts cannot be used to pay for support and care (necessities of life) without jeopardizing an individual’s eligibility for Medicaid and SSI. It is also worth remembering that it does not take a great deal of money to pay only for supplemental items or luxuries. Thus, the trust doesn't need to have a great deal of money in it to accomplish its purpose.” From Estate and Future Planning: Handbook for Ohioans with Disabilities and Their Families,” David A Zwyer, Esq, 2004. ______________________________________________________________

Attorney/Agency/Company managing the trust

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Address

______________________________________________________________ Phone Number Location of a copy of the Trust______________________________________

List agencies notified about the Trust_________________________________

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LAST WILL AND TESTAMENT

“A document that might be used to more fully explain the intent of a person making a Will is called a Letter of Instruction. It may make sense to more fully express one’s wishes in such a Letter of Instruction than is really proper for a legal instrument such as a Will.” From Estate and Future Planning: Handbook for Ohioans with Disabilities and Their Families,” David A Zwyer, Esq, 2004. Attorney____________________________________________________________ Location of a copy of the Will 1Durable Power of Attorney

© Families Empowering Families, The Arc Hamilton County, Revised January, 2003

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Legal/Financial Information

Government/Private Benefits/Assistance (Example: SSI, Social Security/Disability Insurance)

Type of Benefit__________________________________________________

Amount________________________________________________________

Contact Person/Case Worker________________________________________ Department of Human Services Case Worker and Phone Number: ______________________________________________________________

Type of Benefit__________________________________________________

Amount________________________________________________________ Other Benefits (currently receiving) (Example: transportation, cash subsidies/vouchers, utility subsidies) ___________________________________________________________________

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Other Benefits your child might be entitled to upon your death (Example: Veterans, Railroad) ___________________________________________________________________

BANK________________________ Branch Location__________________________

Checking Account Number________________________________________________ Safe Deposit box______________________________________________________ Savings Account Number_________________________________________________ LIFE INSURANCE Company_____________________________________________________________ Policy number_________________________________________________________ BURIAL POLICY Funeral Home_________________________________________________________ Cemetery____________________________________________________________

Documents

your child’s individual needs (see the Creating Your€¦ · Dear Parents and Caregivers, This health care notebook has been designed for you: the parents and caregivers of a child